Next trip, April 17 (Rant)

Hey reader-land, sorry for the long pause. This week has been a wee bit nuts, but I’ll have more this weekend.

So! Visit to UMass #2 will be on Tuesday! Another day trip up and back. This visit is just a small one to check on how I’m doing month-to-month. Actually, it’s a really short appointment. Like 20 minutes short. The flights and drives are quadruple that time – but I’m not going to complain, it’s for SCIENCE! (And my own health. You know, the whole “living” thing.) Second thing is, we are flying to Hartford, CT this time. Cheaper and the same distance to drive. (A fun fact, Woooooostah is in the middle of Boston, Hartford, and Providence. So, depending on the day, any of them might do just fine.) I’m not sure of everything that is in Hartford aside from financial institutions, but I did find out that there is a place called Mark Twain’s house. You may have heard of him, he’s quite famous, I’ve heard!

They don’t make architecture like they used to.

So, I’m pretty excited. Any visit is a good sign that I might be able to get on this trial, and the prayers that i don’t get placeboes are welcome!

I’m going to piggyback here with something, and I may write a separate post on this too.

Let’s rant now about a 20 minute visit, where to get the appointment you need to fly a total of 3 hours and drive 2+, and wait around to get past security. Who makes the rules that says you can’t do these visits over the phone? Who in their right mind wouldn’t think that “you know, maybe we can do this over FaceTime or Skype or whatever.” Even the US government uses teleconferences, and that’s saying something for the boondoggle bunch.

Well, first answer is that “Brainstorm” sets the rules. They are the pharmaceutical co. that makes the drug, and if it’s successful they stand to make a lot of money (and I will shake their hand if it’s successful.) Makes sense that they want as much control to ensure their treatment is successful or not. I have nothing against them, in fact I want them to make money because I want their drug to work.

You know who I do have something against? The FDA. They are the ones that set the parameters for phase 3 trials for drug companies to follow. “Oh”, I say. “So the FDA says that double blind placebo tests are good for terminal diseases.” Yup. Let me repeat this more forcefully. The FDA’s guidelines for ALS drug trials involves a knowing risk to people affected by the disease that half might get life saving or life enhancing drugs, and half won’t. A risk that people who have a prognosis of 1-5 years to live are going to be put through. 1-5 years to live. There is already a small subset of people that get ALS, and then a study like this one can take 2+ years to complete because they want 200 people on the trial. The FDA’s guidelines are ones that give minimal hope to ALS patients – it’s a rule that is there that doesn’t regard the humanity of the patient. It’s being held because “well it’s the rules.” I’m sorry, but there are all of 2 approved treatments for ALS. 2. And with these parameters, more ALS patients will die before a 3rd is found.

I’m a little bitter, yeah. I’ve said before on this blog that both the FDA and the disability industry isn’t taking care of patients, of people, and instead paying more attention to the rules or maybe even the shareholders. I will share what Steve Gleason wrote about this whole thing, here: please click this link, or, “clink”. (Also see my comment that modern tech isn’t helping either.) I happen to think that incremental treatments aren’t good enough (Mr. Holland’s Opus paraphrase) for this stuff. I happen to find it terrible that diseases that have a ton of funding (and treatments!) get more publicity and support than ALS patients by the big sports leagues because their PR system is better, or they can sell specific colors to sports fans. It’s all about the money? Sure. But it’s my life.

Can the FDA change it? Sure. It’ll take years, but it could happen.

This is why I’m reaching out to the big companies. I want to get on the radar, and maybe, just maybe (maybe even after I’m dead), those companies would support ALS research in medicine and technology. Maybe in the future their can be a cure and a way to support those with mobility issues.